Live Research Spotlight 1: Cancer

Background
Social support can decrease social isolation and improve quality of life in cancer survivorship. However, little is known about how to strengthen social support experiences among transgender and gender diverse (TGD) cancer survivors. This study aimed to qualitatively explore: 1) social support needed and received by TGD cancer survivors and co-survivors/caregivers as they navigate their cancer care, and 2) recommended approaches to better meet their social support needs.
Methods
A purposive sample of 17 TGD cancer survivors (age 22-60) and 5 co-survivors (age 33-63) from the United States and Canada were enrolled in the study. Ninety-minute in-depth interviews were conducted via videoconference. Thematic analysis was guided by Social Support Theory.
Results
Theme 1) Social support needs varied according to context and relationship type. Needs from family, partners and friends were primarily around emotional and instrumental support and needs from healthcare providers and systems focused on informational and financial support. Theme 2) TGD survivors felt most supported by friends and ‘family of choice.’ Friends offered multiple types of support (e.g., instrumental, emotional), which included assistance completing daily tasks, processing the emotional challenges throughout care, and advocating for the TGD survivor during interactions with the healthcare system. Recommendations for improving social support were: Theme 3) Assistance with building stronger social networks among TGD cancer survivors while navigating cancer care; Theme 4) A need for more resources to help for co-survivors/caregivers, who also needed support, to navigate the cancer experience; and Theme 5) Health care provider and health system acknowledgement of all support people as an important part of the team regardless of how they were related.
Conclusion
Understanding social support according to type, relationship, and context provides a nuanced description of how to strengthen support among TGD cancer survivors. Supporting community assets like families of choice and facilitating peer social support within healthcare systems may better meet the needs of both TGD survivors and co-survivors/caregivers. Policies that recognize all support people as members of the care team are also critical to supporting and affirming TGD survivors.

Co-Author - Stephanie L. Corey,
Oregon State University

Co-Author - Isabelle Ginavan,
Oregon State University

Co-Author - Jonathan Garcia,
Oregon State University

Co-Author - Jessica Gorman,
Oregon State University

Background. Breast cancer (BC) is a stressful experience which often evokes BC-specific worries. Persistent stress has been associated with an increase in pro-inflammatory cytokines; however, this effect may be buffered by interpersonal assets (IA), which involve perceived connectedness within one’s social network. This theory is supported by the stress-buffering hypothesis, which suggests that social support may buffer the effect of stress on quality of life (QoL) and health outcomes. We applied this theory within a biopsychosocial framework in this secondary analysis, where we examined whether IA (e.g., sense of belongingness and cohesiveness) moderated the relationship between BC-specific concerns and QoL, as well as pro-inflammatory cytokine levels.
Methods. Women (N=109) recently diagnosed with Stage 0-III BC, who underwent primary BC surgery, but not yet begun adjuvant treatment, enrolled in a virtual cognitive behavioral stress management trial. At baseline, women completed questionnaires measuring BC-specific concerns via the Profile of Concerns about BC (PCBC), perceived IA via the Measure of Current Status – Part B (MOCS-B), and QoL via the Functional Assessment of Cancer Therapy – Breast (FACT-B). Participants also provided blood samples which were assayed for pro-inflammatory cytokines, interleukin-1 beta (IL-1β) and interleukin-6 (IL-6), using ELISA.
Results. Women were on average 60.92 years old, mostly White (81.5%), and non-Hispanic (60%). Multiple regression revealed that greater BC-specific concerns were significantly associated with greater IL-1β (β = 0.10, SE = 0.04, p < .001), but not IL-6, nor QoL. Greater IA were significantly associated with better QoL (β = 3.01, SE = 1.39, p < .05), slightly higher IL-1β (β = 0.24, SE = 0.09, p < .05), but were not associated with IL-6. The interaction between BC-specific concerns and IA was statistically significant for IL-1β (p < .001), but not IL-6 or QoL. Two groups, low IA (MOCS-B = ≤21) versus high IA (MOCS-B = >21) were created to probe further. Simple slopes analysis revealed that though not statistically significant, women with high IA exhibited a smaller association (β = -.03) between BC-specific concerns and IL-1β compared to those with low IA (β = 0.09), supporting a stress-buffering effect.
Conclusions. Results suggest that women newly diagnosed with BC may benefit from psychosocial interventions that promote greater IA and teach coping skills for BC-related distress.

Co-Author - Rachel Plotke, BS,
University of Miami

Co-Author - Millan R. Kanaya, BS, BS,
University of Miami

Co-Author - Sarah N. Webster, BA, BA,
University of Miami

Co-Author - Emily A. Walsh, MS, MS,
Massachusetts General Hospital/Harvard Medical School

Co-Author - Mason J. Krueger, B.A., MS,
University of Miami (FL)

Co-Author - Jenna L. Hansen, BS,
University of Miami

Co-Author - Michael H. Antoni, PhD, FSBM, PhD,
University of Miami

Author - Paula Popok, M.S.,
University of Miami

Background. Approximately 16,000 children and adolescents aged 0-19 will be diagnosed with cancer each year. With high rates of survival (over 90%) come increased concerns about the prevalence of late effects - long-term physical and psychological impacts of cancer. One potential late effect is impacted or delayed developmental milestones, including those surrounding psychosexual development. Survivors who identify as sexual and/or gender minorities (SGM) may be especially affected by the cancer experience and may face a tremendous health disparity in the context of sexual education which, when provided, is often heteronormative and cisgender in nature.

Methods. Semi-structured interviews were conducted as part of a larger qualitative study focused on sexual health-related unmet needs of SGM childhood cancer survivors. Transcribed interviews were coded and then analyzed for thematic analysis. Seven SGM-focused codes – including Disclosure of SGM Identity, Societal Norms/Expectations: SGM Identity, and Homophobia/Transphobia: Towards Self – as well as Unmet Needs: Non-Cancer, guided this secondary analysis. Excerpts were reviewed for overarching patterns and themes.

Results. Thirty childhood cancer survivors who were predominately assigned female at birth (70%), identified as women (53.3%), and White (73.3%) participated. The most common sexual orientation reported was bisexuality (46.7%). There were several themes that emerged, including a taboo surrounding sexual activity and SGM identities which led to a feeling of “grossness” that served as a barrier to self-discovery of their sexual orientation and/or gender identity; an acceptance of their sexuality through educating others about sexual health and sexual orientation; media as a form of non-heterocentric sexual education; and “hiding” one’s sexual orientation and/or gender identity due to cancer or religion.

Conclusion. While childhood cancer survivors already receive limited sexual education, SGM survivors face additional barriers to learning about non-heteronormative sexual activity and orientations that could lead to impediments to discovering their identity. Clinical interventions of these results could lead to diversification of sexual education to be more inclusive of SGM individuals; increased mental health provision to childhood cancer survivors; and improved follow-up surrounding sexual health domains that individuals may be struggling with post-cancer.

Author - Megan R. Wirtz, MA,
The Graduate Center, City University of New York

Co-Author - Carly D. Miron, BA, MA,
The Graduate Center, City University of New York

Co-Presenter - Kate Scotchie, BA,
Hunter College, CUNY

Co-Author - Stella Jendrzejewski, Ed.M., MA,
Hunter College, CUNY

Co-Author - Jennifer S. Ford, PhD, FSBM, PhD, FSBM,
Hunter College, City University of New York

Background: In breast cancer, clinicians add data on social support to patient electronic health records (EHR) often in free text notes, but those data may be challenging to use for screening or research purposes. We evaluated development of an EHR-Support score, designed to summarize social support data from the EHR.
Methods: Using unstructured EHR data and natural language processing, we developed 11 concept groups (items) which captured information about social support. We also used structured data to create 2 additional concept groups. We extracted data for the 13 concept groups in 996 women who provided data on objective and subjective measures of social support as part of the Pathways Study, a Kaiser Permanente Northern California cohort of women diagnosed in 2005-2013 with breast cancer. EHR-Support scores were generated three ways: counting the number of concept groups reported; using item response theory (IRT); and converting counts to the IRT metric (converted count scores). We generated different sets of scores incorporating partner status as a concept group in the scores or by creating different scoring methods for partnered and unpartnered participants. We correlated scores with the subjective (Medical Outcomes Study (MOS)) and objective (Social Network Index (SNI)) patient-reported social support scores.
Results: Nearly all MOS and SNI and social support scores were significantly associated with the count score (r’s: -0.072 to -0.163), IRT score (r’s: -0.063 to -0.129), and converted count scores (r’s: -0.068 to -0.163) when including partner status as a concept group in the score. The IRT score (r’s: -0.115 to -0.179) and converted count score (r’s: -0.110 to -0.195) stratified by partner status were associated with nearly all MOS and SNI scores. The count score stratified by partner status was only associated with three MOS subscales (r’s: -0.062 to -0.092). The emotional-informational subscale of the MOS was not related to any of the EHR-Support scores (p’s>0.05). Scores using partner status as a concept group had potential problems with model fit whereas scores stratified by partner status did not.
Conclusion: The EHR-Support score is a valid and feasible measure of social support that can be used for clinical screening and in health services research. The converted count score stratified by partner status may provide the best balance of validity, precision from IRT and feasibility of implementation in healthcare systems .

Presenter - Salene M.W. Jones, Ph.D., M.A., Ph.D., M.A.,
Fred Hutchinson Cancer Center

Co-Author - Rhonda-Lee Aoki,
Kaiser Permanente Northern California

Co-Author - Stacey Alexeeff,
Kaiser Permanente Northern California

Co-Author - David Carrell,
Kaiser Permanente Washington

Co-Author - David Cronkite,
Kaiser Permanente Washington

Co-Author - Larry Kushi,
Kaiser Permanente Northern California

Co-Author - David Mosen,
Kaiser Permanente Center for Health Research

Co-Author - Shaila Strayhorn-Carter, PhD, MPH, PhD, MPH,
University of North Carolina Wilimington

Co-Author - Leah Tuzzio,
Kaiser Permanente

Co-Author - Jessica Mogk,
Kaiser Permanente Washington

Co-Author - Candyce Kroenke, ScD, MPH, FSBM, ScD, MPH, FSBM,
Kaiser Permanente Northern California, Division of Research

Cancer is the leading cause of death among Asian Americans (AAs). AAs are members of collectivist cultures, which are interdependent and value fulfilling role obligations. Following changes in physical function and social roles/responsibilities (e.g., job loss) after cancer diagnosis, persons from collectivist cultures may view themselves as a burden on family member caregivers, which is related to a lower quality of life and more distress and depression. In healthy but not cancer populations, positive activity (PA) interventions, such as acts of kindness, have been shown to increase feelings of autonomy, competence, and connectedness, which are associated with psychological well-being. The purpose of the current study was to test the feasibility and preliminary efficacy of two PAs, household contribution and outside contribution, in increasing autonomy, competence, and connectedness and reducing self-perceived burden among AA cancer patients. Forty AA cancer patients, mean age = 54.6(13.3), within 1 year of diagnosis were randomized to one of 3 groups: 1) household contribution (e.g., cook for caregiver); 2) outside contribution (e.g., donate food); or 3) control (keep track of daily activities). Patients engaged in the PA or control activity once per week for 4 weeks. Autonomy, competence, connectedness, and self-perceived burden were assessed at baseline and 4 weeks. The completion rate for the PAs was 28/32=88% (benchmark ≥75%), and the engagement rate for participants in intervention conditions was 67/79=85% (benchmark ≥70%) of requested activities. To evaluate the potential impact of the PAs, effect sizes were estimated using Cohen’s d, describing the size of the difference between means of intervention vs. control post - pre difference scores in baseline SD units (only values >.10 are reported). The household contribution group reported higher autonomy (d = .16) and competence (d = .23) and lower self-perceived burdensomeness (d = -.14) and connectedness (d = -.46) over time than controls. The outside contribution group reported less autonomy (d = -.16), connectedness (d = -.46), and competence (d = -.39) over time than controls. Overall, the household contribution PA appeared to be feasible and beneficial to AA cancer patients, and a larger RCT is indicated to investigate further. If found to be efficacious, this low cost, not stigmatizing, and highly scalable intervention can be disseminated to AA cancer patients to help increase their well-being.

Presenter - Lilian J. Shin-Cho, PhD,
Fox Chase Cancer Center

Co-Author - Meagan Whisenant, PhD, APRN,
The University of Texas MD Anderson Cancer Center

Co-Author - Carlos H. Barcenas, MD, MSc,
The University of Texas MD Anderson Cancer Center

Co-Author - Lorenzo Cohen, PhD,
The University of Texas MD Anderson Cancer Center

Author - Qian Lu, MD, PhD, FSBM,
The University of Texas MD Anderson Cancer Center